Adolescents and Young Adults with Spina Bifida Transitioning to Adulthood: A Comprehensive Community-Based Needs Assessment

Abstract Objective Developing effective interventions to promote successful transition to adulthood for adolescents and young adults (AYA) with spina bifida (SB) requires input from SB community stakeholders, particularly AYA themselves. The goal of this study was to identify and prioritize facilitators and barriers of successful transition to a healthy adult life for AYA with SB. Methods We utilized concept mapping, a community-engaged research methodology. We recruited a purposeful sample of SB community stakeholders: AYA with SB, parents/caregivers, pediatric and adult healthcare providers, and community organizations. Participants generated ideas to open-ended prompts. A subset of participants sorted responses into groups of similar ideas. Multidimensional scaling and hierarchical cluster analysis were applied to generate cluster maps. The concept map was determined by identifying the optimal cluster number that qualitatively represented meaningful and distinct concepts. Concepts were rated by participants for importance and feasibility. Results Participants generated 90 unique ideas that were then sorted. The research team chose a 10-cluster concept map: coordinated and comprehensive medical care, health and wellness, self-management, self-advocacy, skills to maximize independence, inclusivity and relationship supports, physical accessibility of the environment, employment, finances, and community- and school-based resources. Self-management, self-advocacy, and inclusivity and relationship supports were rated as both highly feasible and important. Conclusions By using concept mapping to engage diverse stakeholders, including people with intellectual, development, and physical disabilities, this study prioritized less traditional areas like inclusivity and relationship supports to focus improvement efforts relevant to AYA with SB becoming healthy adults.